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      Quality of Life Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA): Comparison of Normative Reference Data for the General Population of England and Wales with Results for Adult Hypopituitary Patients with Growth Hormone Deficiency

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          Abstract

          Background/Aim:Age- and gender-specific reference values for the quality of life (QoL) measures used in assessing the impact of growth hormone deficiency (GHD) are important. The objective of this study was to develop such data for the QoL-AGHDA instrument for the population of England and Wales and to demonstrate the QoL deficit in patients with GHD. Methods: For the purpose of this study, a questionnaire was developed that contained the EurQoL EQ-5D, QoL-AGHDA, questions recording an individual’s general situation and social functioning, and a self-reported five-point rating scale of general health. The questionnaire was mailed out to a sample of 1,190 individuals drawn from the general population of England and Wales. Corresponding data for 836 patients were retrieved from KIMS (Pfizer International Metabolic Database). The postal survey data were weighted to ensure that they were representative of the general population. Results: The mean weighted QoL-AGHDA scores for the general population were 6.2 and 7.1 for men and women, respectively, compared with 13.6 and 15.7 for patients. For both males and females the differences in mean QoL-AGHDA scores between the general population and patients were statistically significant for all age categories (p < 0.01). In the general population the mean QoL-AGHDA score for each category of self-assessed health status increased progressively, indicating a poorer QoL as health status declined. Conclusions: This study reports QoL-AGHDA normative values for the population of England and Wales and confirms the extent of QoL impairment in patients with GHD in comparison with the general population.

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          Most cited references 25

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          A single European currency for EQ-5D health states. Results from a six-country study.

          The EQ-5D questionnaire is a widely used generic instrument for describing and valuing health that was developed by the EuroQol Group. A primary objective of the EuroQol Group is the investigation of values for health states in the general population in different countries. As part of the EuroQol enterprise 11 population surveys were carried out in six Western European countries (Finland, Germany, The Netherlands, Spain, Sweden and the UK) to value health states as defined by the EQ-5D using a standardised visual analogue scale (EQ-5D VAS). This contribution reports how a European set of general population preference weights was derived from the data collected in the 11 valuation studies. The scores from this set of preference weights can be applied to generate a VAS-based weighted health status index for all the potential 243 EQ-5D health states for use in multi-national studies. To estimate the preference weights a multi-level regression analysis was performed on 82,910 valuations of 44 EQ-5D health states elicited from 6,870 respondents. Stable and plausible solutions were found for the model parameters. The R(2) value was 75%. The analysis showed that the major source of variance, apart from 'random error', was variance between individuals (28.3% of the total residual variance). These results suggest that VAS values for EQ-5D health states in six Western European countries can be described by a common model.
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            The QLDS: a scale for the measurement of quality of life in depression.

            It has been apparent for some time that utilisation of health services is more influenced by how people feel than by their 'objective' symptoms. Research has also shown that compliance with treatment regimens is dependent on the impact of that treatment on the patient's well-being. Such findings highlight the need to assess the patient's view of his or her progress through the health care system. This has led to a growing interest in quality of life assessment and, in particular, to the impact of illness and its treatment on the quality of life of the patient. Perhaps surprisingly, interest in quality of life measures for outcome assessment in Psychiatry has been slower to develop than in other specialties. While a number of clinician- and patient-completed measures of the severity of depressive symptoms exist, no measure of the quality of life of depressed patients is available. This paper describes the development and testing of the Quality of Life in Depression Scale (QLDS), a new measure designed to fill this gap. The theoretical basis for the instrument is that life gains its quality from the ability and capacity of the individual to satisfy his or her needs. The items included in the QLDS were derived from 30 qualitative interviews with depressed or recently recovered patients. Further interviews were held with depressed patients to establish the face and content validity of the instrument. Respondents had little trouble completing the questionnaire and found the content to be relevant to their experience of depression. The QLDS represents an important advance in our ability to understand the impact of depression on quality of life.
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              The influence of growth hormone deficiency, growth hormone replacement therapy, and other aspects of hypopituitarism on fracture rate and bone mineral density. .

              To assess the influence of factors affecting fracture risk and bone density in adult hypopituitary patients with growth hormone deficiency (GHD), data from a large-scale pharmacoepidemiological survey (the Pharmacia & Upjohn International Metabolic Database [KIMS]) were analyzed and compared with data from a control population (the European Vertebral Osteoporosis Study [EVOS]). The KIMS group consisted of 2084 patients (1112 men and 972 women) with various types of pituitary disease and EVOS consisted of 1176 individuals (581 men and 595 women). Fracture and bone mineral density (BMD) data were available from 2024 patients from the KIMS group and 392 patients from EVOS. The prevalence of fractures in patients with hypopituitarism was 2.66 times that in the non-GH-deficient EVOS population. Adult-onset hypopituitarism with GHD was associated with a higher fracture risk than childhood-onset disease, and patients with isolated GHD had a similar prevalence of fractures to those with multiple pituitary hormone deficiencies. Hormonal replacement therapy with L-thyroxine, glucocorticoids, and sex steroids did not affect the risk of fracture in KIMS patients. In addition, fracture rates in KIMS were independent of body mass index (BMI) and the country of origin. However, smoking was associated with a higher fracture rate in this group. In summary, this is the first large-scale analysis to support the hypothesis of an increased fracture risk in adult patients with hypopituitarism and GHD. This increased risk appears to be attributable to GHD alone, rather than to other pituitary hormone deficiencies or to their replacement therapy.
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                Author and article information

                Journal
                HRE
                Horm Res Paediatr
                10.1159/issn.1663-2818
                Hormone Research in Paediatrics
                S. Karger AG
                1663-2818
                1663-2826
                2005
                September 2005
                31 August 2005
                : 64
                : 1
                : 46-54
                Affiliations
                aKIGS/KIMS/Acrostudy Medical Outcomes, Endocrine Care, Pfizer, Stockholm, and bDepartment of Pharmacy, Uppsala University, Uppsala, Sweden; cOutcomes Research Group, Centre for Health Economics, University of York, York, and dDepartment of Endocrinology, St Bartholomew’s Hospital, Queen Mary University of London, London, UK
                Article
                87444 Horm Res 2005;64:46–54
                10.1159/000087444
                16103683
                © 2005 S. Karger AG, Basel

                Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher. Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug. Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.

                Page count
                Figures: 2, Tables: 3, References: 43, Pages: 9
                Categories
                Original Paper

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